In Valparaiso, Nebraska, a family is striving to raise awareness for their daughter’s rare condition, known as Dravet syndrome. Gracie Wolfe, a six-year-old girl, experiences focal aware seizures that leave her conscious yet unable to communicate. Her parents, Jamison and Tes Wolfe, provide comfort during these moments, encouraging her with soft words of reassurance.
On a typical day, Gracie may find herself in the midst of a seizure that can last up to 40 minutes. During one such episode captured in a recent TikTok video, her parents reassured her, stating, “Everything is OK, it’s just fine.” Gracie’s condition, characterized by prolonged and frequent seizures, is a lifelong challenge. Diagnosed with Dravet syndrome, she has experienced numerous medical emergencies since her first seizure at just one year old.
Dravet syndrome is a severe form of epilepsy that typically begins in infancy and affects roughly 1 in 15,700 to 40,000 individuals in the United States. The condition can lead to developmental delays, behavioral issues, and various motor skill deficiencies. It is caused by a genetic mutation that disrupts brain cell communication, and there is currently no cure available.
Gracie’s journey began in March 2020, when her mother first witnessed the frightening scene of her daughter seizing. The family initially believed it might have been a temporary reaction to a fever, but further episodes led them on a quest for answers. After extensive medical evaluations, they received the devastating diagnosis: Dravet syndrome, which is resistant to medication and can result in silent, prolonged seizures lasting much longer than typical episodes.
As Gracie has grown, her seizures have evolved. They have shifted from sporadic tonic-clonic seizures to more frequent focal aware seizures, often triggered by excitement. Gracie’s parents have observed a pattern indicating that excitement can lead to a seizure, whether it is during a visit to the beach or while celebrating at a friend’s birthday party.
The Wolfe family is adapting to these changes. They have implemented various safety measures, including keeping oxygen tanks at home and using an Apple Watch that monitors Gracie’s heart rate for seizure detection. In addition, they have trained a seizure-alert dog named Addie, who has already alerted them to several episodes.
To help educate others about Dravet syndrome, Tes Wolfe has taken to social media, sharing her daughter’s experience on TikTok. Her videos have garnered substantial attention, reaching millions globally and helping to inform viewers about the realities of living with this rare disease. “Just that makes the whole video worth it,” Jamison Wolfe remarked, highlighting the importance of their outreach efforts.
In August, one of Tes’s videos attracted nearly 800,000 views and received thousands of likes. Comments poured in from around the world, with many expressing gratitude for the awareness raised and sharing their own experiences with epilepsy. This level of engagement illustrates the profound impact their advocacy is having, not only for Gracie but for other families facing similar challenges.
As they navigate the complexities of Gracie’s condition, the Wolfe family remains committed to supporting one another. Their two older children, Lexi and Jackson, play active roles during Gracie’s seizures, helping to ensure her safety. “We are a team,” Jamison stated, emphasizing the importance of family unity in the face of adversity.
Gracie’s vibrant personality shines through despite her challenges. She enjoys being active, whether it’s jumping on her trampoline or playing with the family’s pets. Her spirit is infectious, and her family affectionately refers to her as “Crazy Gracie.”
Recently, Gracie was granted a wish through the Make-A-Wish Foundation, and she is excited about the prospect of visiting Disney World. This opportunity represents not only a joyous experience for Gracie but also the ongoing support of their community. The people of Valparaiso have rallied around the Wolfe family, providing assistance during emergencies and organizing fundraising events to help secure a seizure alert dog.
As Tes Wolfe continues her advocacy, she remains hopeful that greater awareness will lead to better support for families affected by Dravet syndrome. “I’m big on advocating for hard things,” she stated, underscoring her commitment to raising awareness and understanding of this challenging condition. The Wolfe family’s journey is a testament to resilience and the power of community in overcoming adversity.
